Living in the darkness

I haven’t written anything on here for just over 2 months now, the main reason is I just got swallowed up whole by my depression and I just haven’t had the energy or desire to do the basic life things let alone sit down to write.

The main cause of my depression has been lockdown unsurprisingly, as it has I’m sure effected every single person in one way or another. It’s been an incredibly hard time and I haven’t experienced this depth of the darkness and isolation in such a long time and its not a place I like to be in. But I’ve had zero control in getting myself out of it and making myself feel better and you know right now that’s ok. My brain is doing everything it can to protect me from further tramua.

I’ve had silly comments from people who’ve said well I survived through it, I live in a beautiful area etc, which is extremely dismissive of how I’ve been feeling and its a reason why no one really knows just how bad and how dark the places I’ve been in recently because I get sick of this toxic positivity bullshit! Yes I’ve survived lockdown so far, but only fucking just and I mean I was on the verge at a few points of ending it all because the loneliness and depression was just so loud and it was so intense that I just didn’t and couldn’t deal with it anymore. But I did keep pushing through and its still not something I can feel proud about because I’m not out of the woods yet. I’m still pretty depressed, I’m just a fucking master at hiding it.

A few weeks ago it was my 3 years on testosterone and 1 year post op top surgery and in July I had arranged to meet up with some friends to celebrate as the previous years I haven’t and its something that’s extremely important to me and I wanted to celebrate, but it was pretty much a fail because most people bailed! which hurt like fuck and still fucking does and I’m still so angry and upset that I’m not overly interested in talking with the people that bailed. I tried to be happy and grateful for the few that did turn up but I just couldn’t, I was already extremely depressed and this just topped it off. Next year I’m not going to fucking bother! I am so fucking done with people!

People are so fucking fake! Always promoting mental health, self care etc but fuck me right! I don’t actually matter! I’m so fucking angry with people, I’ve been let down by everyone over the years and I have not one single person who I can rely on. I hate everyone, I don’t deserve to be treated this way, I bend over backwards to help anyone but no one seems to be able to celebrate something that’s extremely important to me. I am fucking done with everyone! I’m just not interested anymore. They can talk the big talk but I don’t trust that shit anymore, when it comes down to it, no one actually shows up for me.

All is does is make me feel like a really fucking shitty person! I feel like the worse person in the world cuz I’m 35 and still have no friends and I still don’t understand where I’m going wrong like wtf!? am I this fucking dumb?! I know I am far from fucking perfect, I know I’m an annoying dick head but I’m not a bad person. Yet shit like this makes me feel like the worst person in the world.

I see everyone else with their friends, having fun, doing stuff etc and there’s just me here on my own, like when’s it my turn?! When is it my turn to have friends and be happy? I fear my life will always be like this. I can’t seem the change the patterns no matter what I try, I try be like everyone else, I try and be myself, nothing works. So must be me right?

I’ve always felt like such an outsider, I feel like I’m from a different planet cuz I just don’t fit in socially, its too hard. But I don’t understand why I’m so different, I hate feeling like this. I don’t understand why people don’t like me or why people just can’t be bothered to put the effort in with me. I can’t change what I don’t understand.

I’m so fed up of writing about the same shit and crying about the same shit. I don’t think people understand the depths of my isolation really is. I have no emotional connections with anyone, certainly not my family and no friends. I’ve become so shut down emotionally so I can deal with this depression and loneliness, I can barely feel anything other then sadness and anger. I spend 99% of my time alone, there’s only 2 people who regularly message me and to be honest the last few months they’ve really helped get me through. But its still not the same as social interactions, I get so much from social interactions and I just haven’t had any for so long, its beyond difficult.

I’m back at counselling now, I begrudgingly went back. I enjoy going and I enjoy talking about stuff and its at least some social interaction for the week. But I’ve been in counselling for the last 20 years on and off, I’m starting to feel I’m too broken to ever be fixed and this is just my life forever now. My life has been hard and its still hard, with a few moments of happiness but they seem to be few and far between. The darkness is just so strong, its hard to climb out of it. Most days, I just let the darkness take over and I just sit and completely disassociate so I can just get through the day. I’m barely functioning most days, I have my non negotiable things I do each day, like take my meds, do my sinus rinse and take the dogs out, but the energy it takes just to do those small things is immense. I’m barely getting through each day and its exhausting. I want so much to be happy, to be loved, to have friends, to have adventures with my friends, but seems like that’s a lot to ask for. It’s all I’ve ever wanted from life. But damaged people don’t get a happy ending right? I just feel like I’ll be living in this darkness forever, its the only constant in my life over the years. I can’t remember when the darkness and I first met but I think I was quite young.

I do think my diagnosis of Bipolar is wrong, I reckon I have complex PTSD, autism spectrum disorder and ADHD as all 3 of these have symptoms that are the same or similar to bipolar and all 3 have overlapping symptoms with each other. I don’t have the energy to speak to my GP about any of this as I know I’ll get sent to my psychiatrist who doesn’t believe in adult ADHD, which is ridiculous and I just hate talking to him, I find it hard to get everything out as I feel like he’s sat there judging me, I always feel like he thinks that I’m just an attention seeker. So yeah I hate talking to him and I can’t ask for someone else as he’ll block that because he’s a prick! But hopefully through counselling I can figure some stuff out and maybe gather some evidence for a potential re diagnosis.

So yeah that’s me, writing out my heart and soul of darkness!

Peace out

Zak

Self care during self QUARANTINE

I suffer with mental health issues, mainly depression and anxiety. But also struggle with disassociation and gender dysphoria. As I’ve mentioned in previous posts, I started myself back on trazadone to get through this tough, uncertain times. I’ve been back on it for around 5 days now and I’m already feeling a little better then I was feeling.

I know what its like to be socially isolated and it freaking sucks! It’s super hard! Even though I can be shy and a bit of an introvert, I do love being with other people. But as I am vulnerable to getting the covid19 I am staying away from people, ie not having people over and stuff. So I’ve been thinking of ways that I can stay connected with people, so the social isolation doesn’t hit me so hard and I can stay sane and mentally well.

One thing that has helped so far is that I’ve been reaching out to others who I know are in the same situation as myself and making sure they’re doing good. I find it hard to reach out to others when I need help, but this is a unique situation, we’re all kinda feeling the same anxieties and uncertainties, so I don’t need to express explicitly that I need help or support, as we’re all in the same boat right now. Which is making it much easier for me to reach out, as I feel like I’m helping others instead of asking for help/support which I’m not keen on doing.

I’ve offered people video calls/voice calls and messaging, to ease the social isolation and I’ve had a few video calls and voice calls with a few different people already and its been an absolute blast. Talking with my friends has definitely helped! Video calls makes it feel like I’ve socialised and got that essential interaction with people that we all crave. It makes the days feel less lonely and isolated.

I know I am often viewed as someone who is strong and capable, as I rarely let myself be truly vulnerable in front of people. So I feel like sometimes people don’t check in on me, as I’m seen as someone who can look after themselves quite happily. Whilst yes I am more then capable of looking after myself but I have my struggles. I’m trying my best to keep reaching out and talking to people. So I can feel connected with others and feel like I’m making a difference to others.

At times like this it’s important to remember no matter how alone we may feel, we are not alone! There is a community out there to help get you through this, you just have to be brave and reach out.

I’ve also been trying to keep some sort of routine, although its super flexible, I’ve just been trying to keep doing the things that for me are non negotiable for example I have to make sure I take my meds in the morning and evening, doing my sinus rinse morning and evening, do the housework every other day, walk the dogs twice a day, eat 2 meals a day. I’ve kinda given up on my sleep routine as I’m more awake in the evening hours anyway. I’m still making sure I get enough sleep, whether that’s napping in the day or waking up late.

I try and split my day up into units of time so the day doesn’t feel so overwhelming. I also try and remember that I don’t need to fill every second with an activity, its totally ok to just sit and be.

I roughly know how much time certain things will take me to do, like doing the housework takes about 30-40 mins, having a shower and getting dressed takes between 10 and 20 mins depending on how long I’m sitting in the shower for. So I know that when I decide to wake up and start my day how long it takes for me to get ready for the day and that’s like the first unit of the day and then depending on how I feel and what the weather is like helps me decide on what to do with the dogs, either a long walk or a short run around across the road. That’s another unit of time take up and you get the idea, cutting the day into more manageable chunks without feeling so overwhelmed about having to fill a whole day.

I wrote a list of things I can do on my own whilst were all on lockdown, so I’ll share with you what I wrote down

Things to do during self isolation –

Check in with myself daily

Video call friends

Reach out on social media

Write and blog

Try and read (I have adhd so I struggle to concentrate sometimes)

Listen to podcasts and audiobooks

Colour/draw/create something

Teach Scrappy new tricks

Play video games

Teach myself to play solitaire with playing cards

Nextflix/Amazon/DVD’s

Spring clean the flat

Walk the dogs

Watch YouTube videos

Create a cosy fort/nest

Yoga

Make bread, cakes, biscuits, meals

Nap

Be silly

I hope you’re all coping as well as you can during these uncertain times. We need to come together as one, show each other the kindness, the compassion and the unconditional love that I know we are all capable of.

If there’s anything you want me to write about/comment on please let me know and I shall try my best. Please like, share, comment and follow my blog

Peace out

Zak

A quick catch up

Just looking at when I last wrote and it was nearly 3 weeks ago, which feels like forever. I’ve struggled to sit down and concentrate mainly because I’ve been so exhausted but I’ve also been really struggling with disassociation, sometimes when I sit down I just feel frozen in place and I just cannot move, its so weird. It’s like part of my brain has just switched off but a tiny voice is still aware and awake, screaming at me but its too quiet to wake the rest of my brain up. It’s really frustrating as I have no control, so I try not to sit down to much so I’m not loosing chunks of time. But its not realistic, as much as its frustrating and makes me feel a big agitated I’m just letting it happen because it makes it worse if I fight against it. My brain is clearly just trying to protect me from something, I’m sure I’ll figure it out what.

That’s kinda where I’m at right now, still a bit depressed I think, which I have a real time accepting. Which makes the depression worse, I bully myself so much and I think as it was my birthday last week that exacerbated how I was already feeling as birthdays bring up so much stuff, which I’ll go more into in another post. Just writing this first to get the brain working and fired up lol!

It’s been really hard work to get myself organised and get stuff done as my brain is so foggy and so forgetful. Thoughts and stuff aren’t quite clear and sometimes don’t really make sense and aren’t in any order, which is making organising myself and my life pretty tricky. That plus my fatigue has been crappy as well, most days I’m not getting up and out till way past 12 pm but I’m trying not to be so hard on myself about it and just go with it. Although I do feel there’s a fine line between being lazy and resting and I’m not sure where that line even is at the moment.

I’m sure things will be less hazy soon, I kinda feel like I’m traipsing through thick, sticky mud and every task, every thought, just everything feels so heavy and so difficult. But I keep pushing through this mud, keep trying to find the beauty in every day, keep trying to smile and laugh every day. Its super hard, but I’ve been through this before, I know it passes, I know I will feel better eventually.

I’m still doing the weird breath holding thing, some days are worse then others. It’s starting to get frustrating as I can’t fix it. I think maybe its because I have things inside that have been left unsaid and I need to get them out. I need to write out some stuff out, not to post but to either pass on to the people I need to get stuff out too or just to get stuff out as a way of releasing it. I know its probably anxiety as well but deep routed as I don’t feel anxious. It probably doesn’t make sense but doesn’t make much sense to me lol.

I think I lost myself a little bit, I am changing and growing faster then can keep up with. But its been cool exploring new stuff, what sparks joy and passion and what doesn’t and who sparks joy and who doesn’t too. I do know I want to explore more, have more adventures, my confidence has grown so much and I am way more capable then I gave my self credit for. But I think that has a lot to do with leaving behind friendships where it was probably a bit codependent and just ended up being no good for anyone, not just me. I feel more free now, I don’t feel like life is on hold.

That’s all for this post but I have WAY more stuff to ramble on about lol! But I shall break it all down into different blogs.

Peace out

Zak

Auto immune disorders suck!

My year has been pretty shit with the whole benefits thing but my health has really taken a dive this past year and all the stress hasn’t helped with that.

I keep looking back at all the things I did last summer and I feel sad because this years been a wash out. It’s been a mixture of being ill and having no money to do anything.

Yes last year I fractured 5 bones but I had a great time. Other then the fractures my health wasn’t that bad, it was manageable.

Being off the methotrexate has definitely caused most of the issues but I was put in a catch 22 situation. I either carried on taking methotrexate and just put up with the vomiting all the time or I stopped and chanced it. I chose the latter mainly because I had zero quality of life, I was sick at least twice and month and each time it would take me a few days to recover from it. It wasn’t pleasent at all and this had been going on for 2 years and I’d just had enough.

So last November I think, I decided enough was enough and I stopped it. Not really knowing what the knock on effect would be, so I chanced it. After all its better then vomiting twice a month.

The consequences of me stopping the methotrexate have been constant and horrific sinus infections, which often led to chest infections on top of that and its been a huge struggled to get it under control as I’m allergic to loads of antibiotics and one stopped working, another one gave me lots of side effects.

I stopped my antibiotics last week because of the horrible side effects, so I’m just winging it at the moment in hopes it doesn’t rear its ugly head again. But so far so good and I think its the longest I’ve been off antiobiotics this year and felt fairly ok.

Having a chronic illness is frustrating and unpredicatable, which is the worst thing because I can never say for certain how I’m going to feel until the day and how I’m going to feel after a certain activity, for example doing the housework. Some days it wipes me out for the rest of the day and other days I’m still able to carry on with my daily activies, it just depends.

I had a steroid injection in my knee again before I went up to London a week or so ago now and by now the swelling should have gone down but it hasn’t and the knee joint is bulging out still. It’s still quite painful most of the time but I’m waiting to see a physio about my kneecap. So I’m undecided about whether to wait for that appointment or make an appointmet to see my GP about it…This is my life lol! Organising what doctor to see about what and how long do I wait? Do I wait until it’s so painful I can’t walk? or go now when its just about bareable.. ARGH! Maybe I’ll chase up what’s going on with the appointment with the Physio, so I can make an informed decison.

So yeah, I’ve really struggled to keep well this year. No matter what I did nothing helped and there’s only so much resting I can do before I want to blow my brains out.

As you can imagine all of this has had a knock on effect on my mental health, because I’ve ended up being quite isolated, lonely and really depressed. I’ve even felt suicidal, with thoughts of self harm and one self harm incident. Yes that was a culmination of the benefit saga too but its all relevent. It just sucks! I wouldn’t wish my life on anyone.

I’ve kinda lost concentration now and the flow of what I was writing. So I’m going to take a break and wrap this up for now.

Peace out

Batman

PIP Tribunal Results are in…

I had my PIP tribunal Tuesday afternoon, I had my awesome friend come with me. He came down from London for the day just to help me. I was so so grateful as I definitely wouldn’t have got through it without him there with me. He also treated me to ice cream afterwards.

J and I hung out all morning, we didn’t do much just watched tv and chatted mainly. It was nice to catch up and hang out, even if we did have to go do grown up things in the afternoon lol.

The tribunal itself wasn’t too horrific, it definitely wasn’t as bad as I thought it would have been.

There was a Judge, a doctor and a disabilities adviser, the doctor seemed to have heard about my Granulomatosis with Polyangiitis, which was good and the other two were actually nice. I didn’t feel too judged by them, like I thought I would, so I didn’t feel to awful when I left.

I didn’t get their decision there and then, as they said its a lot to talk about and digest so they wanted to take their time, so they sent it in the post which I received today.

I want to list once again what my medical issues are, I wont go into how they affect me as I just can’t go through that again.

Anyway I have:

  • Granulomatosis with Polyangiitis
  • Bipolar disorder
  • ADHD
  • Hyper mobility

I got awarded PIP but I only got 8 point for the Living component and NOTHING for the mobility component. When I was on DLA I was on middle rate care and mobility, my health issues have not changed, if anything they have got worse. So how I do not qualify for mobility is beyond me. It means I have lost £100 a month as well, I do still qualify for the severe disability rates on ESA but I do not now qualify for the free bus pass, so I am hoping my Social Services blue pass comes to me very soon, so I can re-apply for my bus pass.

I am not happy with their decision but I am not going to challenge it because I have only been awarded it until Feb 2018, which means I will have to do the forms again by September 2017. Which is absolute bullshit! My conditions won’t have changed in the next 12months I will still have them. But it does give me a chance to get as much evidence as I can in that time.

So as you can all imagine I am angry but I simply don’t have the energy to fight them any further then I already have.

Once again I have a raging sinus and chest infection, I saw a doctor today but she wasn’t my regular GP as he was busy. I asked for another steroid injection, she said she can’t do another too close, its got to be 6 weeks apart really. I asked about re-starting Methotrexate just until I get to Southampton hospital and she said no…But she did give me 40mgs of oral steroids which she said would make me feel better in 4 hours of taking them but it didn’t. I did leave a message with my GP but he didn’t ring, so I’m going to ring in the morning and see if he can ring me and get something sorted, because I am soooo fucking over this right now.

Anyway gonna wrap this up,

Peace out

Batman

How Pokemon Go has helped me

So Pokemon Go was released here in the UK yesterday and I am already hooked.

Even though my generation grew up with video games, I kinda missed out on it all. We had a console when I was about 6 and my favourite game was Duck Hunt, loved shooting the ducks and then when I was about 10+ I had a GameBoy and my favourite game was Tetris. I also had a Tamagotchi and a NanoBaby which I loved! But that’s where my gaming experience ended.

I didn’t even spend much time on the computer, it was a family computer and I only ever really went on it so I could do school projects and that was it really.

I was always one of those kids that was never in fashion or up to date with the latest craze, I think that was partly to do with the fact I was often suppressed and wasn’t allowed to express my true self. I was expected to be a certain way, I was expected to be girly and like girly things but I detested anything remotely female. I was a very introverted child, very shy, extremely self conscious but I now know it was because I wasn’t allowed to be the boy that I was inside.

I don’t often write like this about my childhood because while I had a good childhood, I didn’t get the emotional support I needed throughout my younger years. Even though it wasn’t physical abuse or whatever, that lack of emotional support still effects me today in many different ways. But emotional abuse is just as bad a physical abuse, bruises fade and broken bones heal but the scars on your mind are harder to heal. I’ve worked hard to heal those wounds but some are still raw.

So how does all this relate to Pokemon Go? Well my gender dysphoria has been really bad, mainly because I can’t bind and when I’m out I get misgendered and every time it happens its like a stab in the chest and as you can imagine it really doesn’t make me feel good about myself and it makes me feel like I just want to hide away and that’s exactly what I’ve been doing. I’ve been staying in quite a lot because I feel safe at home, I got no one judging me, or thinking I am a girl, I’m not anxious or nervous. I feel happy and relaxed, I can be myself without worrying about anything.

Becoming a recluse is definitely not the answer to anything, I’ve found that my legs have been a lot more achy since I’ve not been out as much as I usually am. I find if I take the dogs for a walk at least twice a week then my pain is much more manageable then if I only took them out for 1omins a day.

My legs have been so achy the last few day and then yesterday this Pokemon Go came out and it was like I had a motivation boost or something because I was so excited to try it out and go catch Pokemon. After dinner I took scrappy out for a walk down to the Quay and back again. I was out for a little over an hour, which is longer then I’ve been out for in a while. It was so much fun and I didn’t have an ounce of anxiety about anything, I was totally absorbed into the game and finding as many as I could. It just sucked me into a whole other reality.

Usually in the afternoon I just watch crappy day time TV shows but I wanted to go catch Pokemon rather then staying in and watching TV. So I fed foxy, gave her some water and took her for a wee and then made sure she was all comfortable and safe, as she’s not allowed out for a long walk just yet. Scrappy and I headed out and we did our usual route around Baiter Park and I caught loads of Pokemon!

I had just won 1 round at a battle and then lost when a lovely lady and her dog Foxy walked by the bench I was sat resting on. We started talking and instead of her thinking I was being rude because I was on my phone, I showed how what it was and as we were walking along up popped a few different Pokemon and I showed her how to catch them and explained how it all worked. It was nice to talk to someone who was genuinely interested in what I was doing and it was just nice to talk to someone, even if she was a stranger.

It has definitely given my mood a boost, I feel a bit happier today. I feel like I have even more reason to go out each day, it feels like I’ve actually accomplished something, as silly as it sounds.

So as much as people have been going on about how dangerous this game is and how children have been lured by adults and how people have been hurt because the aren’t looking where they are going. For people like me this game has already had such a positive impact on my mental health and I can’t wait to walk Scrappy tomorrow so I can go catch more Pokemon.

Keep gaming, keep doing what makes you happy and remember always be yourself no matter what ❤

Peace out

Batman

Catching up again – Staying afloat

Once again its been about a month since I’ve written anything, it feels much longer though. I am going to try and write more regularly this month and hopefully I’ll get back into the swing of it again. I really enjoy writing and I’ve missed it but I haven’t had much to blog about really as nothing much has changed, I’m kinda just stuck right now, nothing has really changed, nothing has moved forward, I’m just still waiting and its all out of my hands, there’s nothing I can do. Its frustrating but it is what it is I suppose.

I’ll get the B word out of the way… Benefits, PIP. I am still waiting for a court date and it should be around September when I get an appointment through. So that’s that… this has been going on since, September 2015! I am absolutely disgusted by this entire process and to know I am not the only one going through this makes it worse, because I know I am strong enough to deal with whatever life throws at me, but there are those that aren’t as strong and have killed themselves as a result of being deemed fit to work. My heart hurts for those people… I’ll end it there or I will just keep writing.

So gender clinic and gender stuff – I wrote Charing Cross a letter with my new NHS number and I asked if I was going to be seen soon. I’ve not heard anything back yet..that doesn’t overly surprise me. My referral was done last July and the then waiting list was 13months so I will hopefully get an appointment next month! Fingers, toes and tits crossed everyone!

I have totally given up on binding, I simply can’t do it. I’ve tried 2 different brands of binders and a high intensity sports bra, they all worked great but I can’t deal with how they feel, the tightness, the material, the fact they make me hot and they hurt. It’s all just too much and I can’t deal with it, it makes me feel weird just writing about it. It fucking sucks! It makes me feel like shit, just a daily reminder that I’m not even close to being who I feel on the inside. While I am out and on the phone, I get misgendered and it feels like being stabbed in the heart, it makes me not want to go out and do things, it makes so fucking self conscious. I already have anxiety about talking on the phone but this makes it even fucking worse. I feel safe at home and I’ve noticed this year I haven’t done half of the things I did by this time last year. Most of this is down to my physical health being awful but even on the days I feel well, I just don’t want to go out and face the world because the world doesn’t see me the way I feel inside and its hard. So I have been hiding away more then I usually do and if I do go out, its with people I feel safe with and to places I feel safe to go. I get more excited at the prospect of staying in and doing my own thing then going out and doing stuff… But it is a fine balance of staying at home feeling safe and completely isolating myself, which is difficult. I think staying in and feeling safe is the most important thing for my mental health at the moment, I need to keep myself safe.

Physical health stuff – I saw my Thoracic medicine doc last month and he’s happy with my breathing test results, as they have remained unchanged for a long time, so he’s discharged me. But I can be referred back if I need to be. I am happy with this, its one less appointment to go too. He looked at my CT scan of my sinuses and my left side is so inflamed and the inflammation is just less then a inch from behind my eye, which explains why I get a lot of headaches and why that side of my head always hurts so much. I see my ENT doc this month, so I will be able to discuss more with him about my awful sinus pain etc and hopefully we’ll be able to come up with something that will be able to help it. I don’t even know what the options would be to make this better, right now I’d say yes to whatever he suggests.

The Gabapentin is going well, I have put on 10lbs which really bothered me at first but I don’t care anymore. I have gone past the stage of feeling the need to eat all the time, so my appetite has returned to being somewhat normal again. I am sure the weight will fall back off again. Coming off the Tramadol is going well, I am now down to 5 tablets a day down from 8 a day. It’s been really hard, as it caused insomnia the start with and it made me clench my jaw so hard it gave me migraines. That’s all starting to get better now, the insomnia is a lot better. I’m not waking up several times a night and I am actually sleeping right through, I am loving being able to sleep all night again. The jaw thing is ok now most days but if I don’t take my Tramadol right on time, then I really start clenching my jaw and it hurts so bad but its out of my control, I try and stop doing it when I notice it happening but it doesn’t work. Overall I am pretty happy with how this med change has gone so far and I am hoping that the Gabapentin continues to work well on its own.

The practice manager at my doctors surgery is still on the case to get hold of my notes, from the mythical place they go to when you change your gender lol. I hope this is sorted soon.

My knee has been alright since the steroid injection and I think the Gabapentin has helped as well. My over all pain levels have been far more manageable on the Gabapentin, well as long as I’m not doing a lot.. As soon as I do “normal” daily life stuff and social stuff, I ache a lot and the fatigue kicks in.

So that’s me really, still feel like an anxious, emotional wreck. I don’t know how I keep going but I do, somehow. I just keep trying to find the little bits of positivity in every day and every situation I come across.

I’ll wrap this up now,

I’ll try post again soon.

Peace out

Batman

Forever waiting – Massive catch up

Again it’s been just over a month since I last wrote anything about my exciting life lol, I’ve been struggling to write at the moment because my life is in a bit of a limbo and the benefits saga seems to be over shadowing everything else and the other stuff seems to be a lot of inconvenient bullshit, that occurs on a regular basis it seems at the moment. But like I said the benefits saga is the main concern and looks like it will be that way for another 3 months.

Whilst I am on the subject of benefits I may as well do a proper update of this ridiculous situation. So in my last post I said that the courts had gotten the appeal with all the information I sent and they were waiting to hear from the Department of Work and Pensions. It’s now 5 weeks later and I rang the courts up last week to see what was going on and they said it can take up to 12-17 weeks for a court date and I am on week 5, so I’ve possibly got to wait another 12 weeks or 3 months which makes it sound longer, just for a court date. September should be when I get a date but fuck knows when the date will be for, probably for 3 months after that, by September it will be 7 months since my money stopped but it all started back last September, when I got the form to fill out, December I had my face to face assessment, January they said no, February I did the mandatory reconsideration, last month I appealed that… and here I am yet again waiting. If I get a court date by September then it will be a year since this whole thing started and to be honest I’m surprised I’ve got through without self harming because it has been incredibly stressful, soul destroying and just utterly horrific. Having to do the appeals and write down all the things I cannot do or that I struggle to do, it has totally destroyed any confidence or self esteem I had about myself and has knocked me to the floor and I’ve been struggling to pick myself back up again. When I read the statistics about the people who have killed themselves because they’ve been deemed fit to work and are no longer entitled to disability benefits, I totally fucking understand why! I totally get it! I have felt so close to the edge and I’ve wanted to end it all several fucking times because I felt like I could just not do this any more. It does make you question the fact of well am I fit to work? Am I really this ill? Is it all just in my head? Even though the rational part of you knows you are ill and you are entitled to the benefits. It’s horrible questioning you’re entire life, whilst having to prove it to others who simply have no fucking clue. Right now this isn’t living it’s existing and everyone is entitled to a decent quality of life. I’m lucky that I have a few good friends who’ve helped me out with money, emotional support, love and just everything a great friendship is made of and I’m lucky to live in such a beautiful place, where I can sit by the water with my dogs just a stones throw from my house.

That nicely brings me onto the rest of my life and what I’ve been up too. I don’t feel like I’ve done a lot really and that’s mainly because everything I do something I have to then spend time recovering from it, which is frustrating to say the least because someone of my age shouldn’t have to rest and recover from activities that most people do without thinking. I’ve spent a lot of time with L and the boys either being here at mine or being at their place and as always its a good laugh but so exhausting, I honestly don’t know how she does it with all her problems too, big respect to her. L dyed my Mohawk blue 😀 and yeah it looks so awesome! I’ve also been regularly going to my groups and counselling, which at times has been hard because I have been so unmotivated and just so low but I’ve pushed myself through it all. Like I previously said I live a stones throw away from the sea and its such a beautiful place, when the weather is nice I could just stay out there forever. I’ve just been trying to maintain some sort of normality, which includes the odd treat for myself and the animals, its been the very rare occasion but I think we all to often forget the power of treating/pampering yourself has, whether it be ice cream, a facial, a holiday or a Lego set. Treating yourself isn’t something you should be ashamed of or guilty about, because lets face it no matter what walk of life you are from, life gets fucking hard and whoever you are, you should have enough self respect to say YES I deserve this. Yes I am on benefits but does it mean I am less worthy to treat myself then someone who works hard for their money? No! that’s what the media wants you to think with all there shit fucking shows about a small minority of people on benefits and they do not at all represent people like me, who have a well documented and real health condition that effects my daily life because they don’t want you to know about genuine people like myself, they have their own agenda and they just demonise everyone on benefits, which if you haven’t already guessed really grinds my fucking gears. Anyway that was off on a bit of a rant lol so back to what I was talking about, so yes I have continued to treat myself, obviously not as much as I did before as I’ve just not had the money but it has been an important part of keeping me going and keeping me sane. I’ve also taken a lot of time over the past month to just be by myself and not talking to anyone and that’s also been a vital part of getting through all this. Overall the last month has been good but the really low darkness is always there in the background, I’m just working really hard not to let it overpower me on a daily basis and I don’t think people appreciate just how hard it is, to battle with your own mind every second of every day, its exhausting. I’m not ashamed to say that I’ve been really low and struggling and I still feel low and I am still struggling and in all honestly without my lovely friends, my groups and counselling I probably wouldn’t be here right now. Besides I do not want to die as the person that isn’t my true self, I need to go through my journey to be the real me.

Moving on to my physical health, which as usual has been a bundle of fun…NOT! Where to start… I suppose I’ll start with my transition stuff as that is fairly straight forward because I am still waiting for my first appointment. But I am going to send them a letter with my new NHS number and ask if they know roughly when I should be hearing about my first appointment. To be honest right now I’m happy to be waiting for this for a few reasons, even though I’m desperate to get on my journey, I have other things in my life that need to be sorted before hand, ie money and meds, so its not really high on my list even though I want it so bad. Sometimes wants and needs differ and needs are more important. Last time I wrote about my knee and trying anti-inflammatory’s, I tried two and neither helped so two weeks ago today I had a steroid injection right into the joint and it has helped to a degree but it still keeps swelling up and hurting, it’s not as bad but still its not great. Also two weeks ago I started Gabapentin which is a anti-epileptic which is also used as pain relief. It seems to be working well along side my Tramadol but I am slowly lowering the Tramadol as my body is addicted to it and I want to see how well the Gabapentin works by itself. The other reason I want to come off the Tramadol is because I will need strong opiate based drugs after the surgeries I have throughout my transition. So I need to detox off it and hopefully when I need it in the future it will be more effective then it is right now. Oh my appetite is great since starting the Gabapentin, it has the same weight gaining effect as Quetiapine and I’ve put on 5lbs in two weeks. It does seem to be slowing down now and I’m not nearly as hungry as last week, I just couldn’t stop eating lol! I am being mindful of what and how much I am eating but it is hard. But to be honest I’m just glad I’m eating and its not a stressful thing. I’ve spoken to my GP about what’s happening with my referral to Southampton hospital and it’s basically down to my gender change…DO’H! So because I’ve changed my gender and title I effectively have become a whole new person, which is true but what happens is that all your medical history is deleted from the doctors system and your are put back on as a new patient, so what they are currently trying to do is get hold of the hard copy of my medical records in order to send to Southampton as they need to know everything before they see me. I certainly don’t remember everything that’s happened to me medically in the last 31 years because well its been loads lol. But yeah I’ve been assured that the practice manager is on it, I feel better now I know what’s happening but it is another thing that I am in limbo with. I swear I spend most of my time waiting for shit to get sorted out lol! Other then that not much has changed, still struggling with fatigue and not sleeping well but it is what it is, I wake up a few times a night sometimes and I just get up have a drink or a wee and sometimes I go straight back to sleep but sometimes I have to get up for a hour or so. I’m not stressing about this because my insomnia or painsomnia issues have been going on for so long now and I’ve tried everything to help me sleep through the night but its clearly not meant to be. I’m on long term Doxycycline at the moment so I’ve not caught any colds, although I have a bit of a chesty cough at the moment but that’s probably down to my sinus gunk dripping down to my chest, which ironically the Doxycycline is meant to help with…I feel its not working lol, my ENT app isn’t until next month so not much I can do or my GP can do right now.

Wow that’s a lot of stuff about me aha! I shall end on a update of my 4 four babies, who are all just in perfect health and are all amazing and are all helping me get through the darkest times and I am totally in love with them ❤

Ooh also here’s a few pics of us all

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^^ yeah boi I am 😀 haha

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^^ Me and Harvey on his 9th Birthday last week ❤

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^^ Me and my boo boo ❤

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^^ Harley doing a bit of yoga lol

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^^Marley moo

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^^ Mr Scrappy doodle

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^^ My beautiful Foxy girl

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^^ I love this place

Right that’s all from this boi, its taken me hours to write this, its very therapeutic though and I do feel calm and grounded.

Peace out Batman

 

 

Waiting is the worst part

It’s only been 5 days since I last posted but it feels much longer as I’ve been quite busy, mainly getting my PIP stuff sorted but I’ve also been doing nice things too, to break up the monotony of the PIP stuff.

I’ll follow on from my last post,

Mr Scrappy doodles continues to be in good health and he turns 2 next week, which has gone so fast. Foxy, Marley and Harley are also doing great and Harley has a birthday next week as well and she will be 1 years old. Its gone insanely fast.

Medical stuff – My whole knee is swollen, so is my ankle and my hip feels like its swollen too, so yeah my whole leg. The naproxen didn’t help at all, it just caused me a huge bruise on the back of my thigh. So I booked another appointment to see my GP and its this Friday…really early in the morning :/ But whatever my leg is really hurting and nothing is helping.

I have my CT scan next week which is cool but my follow up app with my ENT isn’t until July.. So I may try and see if I can bring it forward.

Disability Benefits stuff – With the help of a good friend to get stuff all printed out and another person who checked over my appeal. It all finally came together, yesterday I checked it over like 3 times to make sure everything wasn’t missing and it was all in order. I posted it special delivery which cost £7.10 but it ensured its safety to get there and they cannot say they didn’t receive it in time.

I’m glad its all done but now I’ve got to wait, which is almost as stressful. I so hope they re-think the tribunal, I can’t go through that, I just don’t have the energy for it. This process alone has taken everything from me, I have nothing left.

I’m feeling a bit lost at the moment because the process of writing my appeal has brought up so many feelings, the main feeling being anger and the fact that I’ve not dealt with the PTSD caused by my physical health illness and I don’t know where to start. It’s all been very traumatic and something no one should have to go through.

How do I feel right now? I don’t know, I think I feel sad, I suppose you could say depressed. I just don’t feel connected with myself, I’m not grounded, I’m just exhausted in every sense of the word. Tonight I will meditate, I will try and relax a bit more.

I’ll end this now as my brain has switched itself off.

Peace out

Batman

I am still a work in process – update on life.

WOW so it has been a long old few weeks since I last posted and a lot has happened.

First of all I would like to say that I cannot believe I have kept my shit together, despite all the trials and tribulations I have been through recently. If this was to happen to me say 4-5 years ago then I would have lost my shit ages ago and I would have self harmed A LOT! But I have kept as calm as I could and I’ve not self harmed at all, which proves to me that I’ve grown and that I do not fit the BPD diagnosis any longer.

Um so where to start….

So Scrappy had another trip to the vets last week as he was still poorly but not as bad as his first trip to the vets, so he was given something to balance all the good bacteria in his stomach and it worked really well and he was back to his usual self in no time at all. The vet suggested he be muzzled when he’s out to prevent him from eating shit he’s not meant too. My friend took us to get him a muzzle and it will be ok for now but he can get it off but hopefully he’ll get used to it. All my other fur babies are absolutely fine 🙂

Medical stuff – I saw my new ENT doc and he was ok, he has ordered me a CT scan of my sinuses to see where we go from there and antibiotics until we know what the next step is. He also did me a letter for my PIP.

I also saw my GP and he is doing my referral to Dr Edwards in Southampton hospital! woohoo! FINALLY! He also gave me some naproxen for me knees as they keep swelling up and are really painful.

Disability benefits stuff – So I have been working really hard on writing my appeal as the Personal Independent Payment people have refused my mandatory reconsideration, I feel I was penalised because it was in late, which was not in my control as I had a charity helping me and it was their responsibility, I have since had an apology from the charity but I am still planning on making a official complaint about it. But anyway the appeal has been written and amended by someone who knows what the requirements are etc and its absolutely spot on. It’s all slowly coming together and I will be able to post it on Monday.

Sorting this out has had a huge impact on my physical and mental health and my ability to do anything. I’ve missed a lot of my groups and counselling, I’ve been quite isolated and lonely. I’ve struggled just to do day to day tasks because I have been so tired, in so much pain and feeling far too overwhelmed, even taking a shower feels too much. It has certainly taken a massive toll on me and this whole process has been a huge trigger for the deep routed anger that is inside me.

This whole process has brought up a lot of stuff and has bought up a load of thoughts about all the times I’ve been let down by nearly everyone in my life, at every crucial moment in my life. My core memories aren’t all happy, great memories, they are mostly negative with a bit of trauma thrown in. I am feeling a lot of anger and I don’t know how to get rid of it in a normal healthy way, I know I am on the right path because I know I need to do something about this anger in a healthy way and my behaviour hasn’t been destructive at all, which is a vast improvement since I completed DBT. I just need to work out how to process it, where to start, what do I do?! I will meditate on it, look up ways to process deep routed anger and see where we go from here. I think though I need to stop fighting and rest, my fight, flight or freeze is stuck in fight mode just to get me through all this but, I need to stop for a bit, stop fighting and just be, that will be easier said then done, as I have spent a lot of time in fight mode recently just to get through each day!

How do I feel right now? I feel emotionally, physically, mentally and spiritually exhausted. I need to rest and I will, I need to tend to all my needs and listen to my inner child and what he needs, this reminds me I want to learn more about this and re-parenting my inner child etc.

Just writing this has helped a bit but now I need to eat something and sleep 🙂

But just before I go, here are a few pictures of me and my babies ❤

^^ Marley Moo

^^ Harley playing with her new toys that my lovely friend made 🙂

^^ My beautiful Foxy girl

^^ My photography

^^ Scrappy doodles love swimming in the sea 🙂

^^ Me, I actually quite like this picture of me.

Peace out

Batman